Hope Is an Asset, Not a Strategy

​Being forewarned is being forearmed: Prepping our Special Needs families to navigate coming policy changes 
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​By Mike Dobbyn and Michael Schmanske

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Most parents experience some level of uncertainty when raising their kids—worrying about the right schools, the right doctors, the right environment to help them thrive. But for parents of children with rare diseases or special medical needs, uncertainty is a constant companion. From the moment of diagnosis, they step into an unpredictable world where each day is shaped by a mix of hope, fear, and relentless advocacy. Now, with a new presidential administration and sweeping changes happening now and on the horizon, it is important to be aware and be prepared for how they may affect your family.

Elections have consequences and it doesn’t matter who you voted for; it is a good idea to be aware of what those consequences may be to you and your family.  We thought a good start would be to perform a review of the stated goals of the Project 2025 plan that the Trump Administration appears to be following -- what has been achieved thus far and what we can expect in the coming months.  We will be focusing on those policies which affect families with children with rare diseases and special medical needs.


So… What’s the plan?

Project 2025, spearheaded by The Heritage Foundation, is a hot-button topic and we won’t get into whether it is a good plan or not.  But we do need to acknowledge that regardless of the public statements disavowing it before the election, the Trump Administration is in fact following the Heritage Foundation’s suggestions in many areas through the first two months of its administration.

The public policy proposal outlines a comprehensive plan to restructure the federal government, targeting several departments and agencies for closure or significant overhaul.  Let’s review some stated goals of Project 2025 and compare them so far with the actions of the administration.  Again - we can argue about efficient allocation of funds — but the following actions and policies are facts, not opinions (a link to each announcement is included).

Consumer Financial Protection Bureau (CFPB): To cut regulatory oversight and red tape the blueprint includes shutting down the CFPB.
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Progress:  CURRENTLY UNDERWAY


United States Agency for International Development (USAID):  Dismantle USAID as wasteful.

Progress: COMPLETE


Centers for Disease Control and Prevention (CDC) Reformation: The initiative suggests restructuring the CDC to focus more narrowly on infectious diseases, reducing its role in areas like chronic disease prevention and environmental health.

Progress:  CURRENTLY UNDERWAY


World Health Organization (WHO) Relationship:  Withdrawing funding or participation as a result of the Pandemic.  The Trump administration claims the WHO was lax in recognizing and promoting the danger of Covid.

Progress: COMPLETE


Supplemental Nutrition Assistance Program (SNAP):
Proposed Changes: Via the Department of Agriculture, Project 2025 proposes cuts to SNAP, assisting low-income families in purchasing nutritious food.  Interestingly this was originally conceived as a subsidy for farmers in red states.

Progress: COMPLETE


National Science Foundation (NSF) Overhaul:
Project 2025 proposes prioritizing basic research while reducing or eliminating programs perceived as less critical. This includes potential cuts to grants supporting scientists in rural states and those aimed at fostering diversity in STEM fields.

Progress:  CURRENTLY UNDERWAY


Some of these initiatives deal with population or global health while others directly impact families of children with special needs.  There are a number of other upcoming initiatives ranging from labor to environmental agencies, but we will only focus on those dealing with children’s healthcare.

These are the executive orders and regulatory actions completed by the administration so far. To plan for our future it would be foolish not to consider the as-yet unaddressed policy mandates.


What’s Next:

If you take away only one thing from this article it is this:

When possible, Project 2025 reduces or removes federal oversight and seeks administrative and cost efficiencies by devolving power to the state and local governments through block grants as in the case of Medicaid or local organizations like school boards.  Implementation matters, and often your best opportunity to shape policy is to get involved locally.


Department of Education: The plan proposes dismantling the Department of Education, transferring its responsibilities to state and local governments. Programs under the Individuals with Disabilities Education Act (IDEA) would be moved to the Department of Health and Human Services (HHS), while the National Center for Education Statistics would be integrated into the Census Bureau.
edtrust.org

• Why this matters for parents:  After the change, it will be the HHS not Education that will be running special needs budgets.  There are other impacts, but at its core most families agree peer-integration matters for child development.  By moving services out of the Educational framework we will by administrative necessity regress to a more institutionalized treatment of our children separate from the school system — potentially impacting their capacity for self-care and dignity of life.
• What to watch for as a warning sign:  RFK Jr. is the new head of the HHS so pay attention to his public comments and testimony. Watch for funding and administrative changes.  We do not want to see discussions about creating special facilities or removing the programs from local schools. On the other hand we may see more assistive support for home-care, which could be extremely valuable.
• What we can do:  Get involved locally.  Pay attention to your school board elections.  Make sure school board members are supporters of integrated education. Honestly the hand off to HHS will be an administrative MESS.  Stay a step ahead in your dealings with your local schools and during the chaos you may be able to lead them where you want to go.  Also worth noting: school boards don’t just determine curriculum, they also define funding priorities for the district — make sure you vote in your local elections.

National Institutes of Health (NIH) Restructuring:  Project 2025 advocates for capping indirect cost support for research grants at 15% -- a reduction from previous rates that often exceeded 50%. Many universities subsidize non-profit grants with government infrastructure support creating a kind of public/private partnership, especially for special causes.  

• Why this matters for parents:  Research is always improving our understanding of these complicated diseases.  But rare disease by its nature does not attract a lot of private research support.  Cutting infrastructure support will have an outsized impact on nonprofit funded research.
• What to watch for as a warning sign: IN PROGRESS 
• What we can do: Not much.  Revisit any promising research programs and run funding drives to help support them.  There is no magic bullet here other than to seek alternative sources of funds.

Department of Health and Human Services (HHS): Project 2025 suggests restructuring HHS to reduce federal involvement in healthcare, promoting state-level control. 

• Why this matters for parents:  This restructuring includes assuming the educational oversight of special needs children.  This may result in decreased funding and support for programs like the Maternal and Child Health Bureau, which provides services to children with special health care needs as well as reduced support for mainstreaming and a storm of unclear reporting responsibilities.
• What to watch for as a warning sign: As the Department of Education (DoE) is dismantled, expect a ton of chaos around items like IEP’s and Therapist availability.  In particular, watch to see if HHS prioritizes its new special needs responsibilities or ignores them.

• What you can do: Paired with the elimination of the DoE, this places even more responsibility at the state level. Try to work the chaos of the system.  Failing that, try to be locally active.  School boards and municipal governments will gain additional control over budgeting priorities. Local connections and influence will be more important than ever — but so will local activism.  The squeaky wheel gets the grease. Start squeaking.

Social Security Administration (SSA): The plan promotes reforms to disability programs, including stricter eligibility criteria and reduced benefits.

• Why this matters for parents:  Children with disabilities may face challenges in accessing Supplemental Security Income (SSI), leading to decreased support for their healthcare needs.
• What to watch for as a warning sign: Social Security reform is a third rail issue.  Any legislation altering a program this ingrained in our economy will be COMPLICATED.  Stay informed and aware of the portions that affect your family, especially any language regarding SSI.
• What you can do: Stay informed. This will be a national issue with a ton of noise around it. Write your Senator or Representative, especially if they are Republican as they are in the majority of both houses.  Make sure they know voters care.

Children’s Health Insurance Program (CHIP): Project 2025 suggests dismantling CHIP, which offers low-cost health coverage to children in families that earn too much to qualify for Medicaid but cannot afford private insurance.

• Why this matters for parents:  The extra non-medical expenses of long term support care is not normally included in calculations of “need.”  This program fills the gap. The removal of CHIP could leave many children without affordable health insurance options.
• What to watch for as a warning sign: CHIP was part of the Affordable Care Act - (ACA - nee’ Obamacare). The administration has declared its goal of repealing the ACA so pay attention to any headlines to that effect.
• What you can do: Stay Informed. And really, it sounds trite but write your Senator or Representative, if you are feeling saucy, start a petition campaign to raise awareness amongst your network.

Changes to Disability Accommodations in Schools:  Without federal enforcement of disability rights, schools may not be held accountable for providing necessary accommodations.

• Why this matters for parents:  This could lead to inconsistent support for students with disabilities, affecting their educational outcomes and overall well-being.  Not all families experience the difficulties associated with wheelchairs or other assistive devices, but for those with disabilities this may result in increased resistance by local school districts.
• What to watch for as a warning sign: Watch for correlated stories within your community.  If it seems like prior rules are being ignored, that’s a good indication you may be in for a fight.
• What you can do: This is a local county or municipal issue.  Pay attention to your local elections.  Make sure city and school board members are supporters of integrated education and access.

That is a fairly comprehensive list of the stated goals of the Trump Administration.  Of course not all of these may be enacted and there is room for modification and implementation.  On the other hand these are the stated goals, the known ramifications and possible problems.  As Donald Rumsfeld reminded us:  it’s the unknown-unknowns that get you, so above all stay informed of any changes.


Knowing is Half the Battle.

We have learned a few things about how the current administration intends to achieve their stated goals.  One pattern used by Elon Musk at Twitter and now as the head of DOGE seems to be to turn off all the lights, see who complains and then turn those back on.  This presents an enormous opportunity to activists.  Get out ahead of these changes and prepare your defenses or make alternative plans.

Look, it does not matter how you feel about politics, ideology,  government regulation, expenditures, priorities, the best color to paint a kitchen or your favorite movie. If you have a Special Needs child, it is important that you know how these policies will or might impact families - and how we can soften the blow.  One thing is clear: The government will be cutting these programs unless you advocate for them.  

We are planning to link resources across rare diseases and across the country to give our isolated families the support of the global community.  If you would like to learn more or would like to participate in any of our discussions or fact-finding roundtables, contact us at [email protected]

Other reading:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)00237-5/fulltext

Mike Dobbyn founded the Sanfilippo Project to support the children and families impacted by Sanfilippo Syndrome. By finding the courage to share our individual stories we hope to help others.

#SanfilippoProject #Learn #Share #PayItForward 

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